Rating: 4.95 stars 73 reviews
Location: PO Box 29545 Atlanta GA 30359 USA
Results: Over this past decade, APFED has made a huge impact in all areas of its mission: education, awareness, support, and research. - Educated patients, families, healthcare providers, and the public about eosinophilic disorders and how to manage them. - Initiated groundbreaking advocacy efforts on the state and federal levels to help families secure insurance coverage for medical foods, and encouraged our governments to direct more funds to eosinophilic research. - Played a critical role in encouraging the development of comprehensive guidelines for the diagnosis and treatment of eosinophilic esophagitis. - Led the effort to develop ICD-9 codes for eosinophilic gastrointestinal disorders, which are crucial for insurance coverage of therapy and for ongoing research. - Authored the bill for National Eosinophil Awareness Week (third week of May) and worked with the community to get it passed. - Participated in the NIH working group that was assembled to define unmet research needs for eosinophilic disorders, and we were instrumental in publishing a report on these findings, charting the course for scientific breakthroughs. - Thanks to the generosity of our supporters, APFED’s Hope on the Horizon Research Fund has granted nearly $1 million in support studies that are leading us to a better understanding of eosinophilic disorders, less-invasive diagnostics, and improved therapies. We have teamed up this year with the Allergy, Asthma & Immunology Education and Research Organization, Inc. (a supporting organization to the American Academy of Allergy, Asthma & Immunology, Inc.) to offer a APFED/ARTrust™ Pilot Grant Award. This collaborative award will allow investigators from a variety of disciplines to initiate new projects relevant to eosinophilic disorders, focusing on the development of ideas which are likely to lead to future external funding.
Target demographics: fund research for Eosinophilic Disorders
Geographic areas served: Global
Programs: HOPE Research Grants Trainee Grants Education Programs Advocacy Programs
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APFED’s mission is to embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases. It accomplishes this by focusing on advocacy, research, support of families, and education and awareness.
My son was diagnosed with EoE in 1994, long before this patient advocacy group was created to help deal with this disease. I have volunteered for APFED for many years and joined the board recently in part to thank this organization for all of the work they do to help families like mine deal with this rare condition.
I hope that every family that is dealing with one of these eosinophil-associated diseases will find APFED and take advantage of all of the resources they have to offer, including the annual conference. Even though my son had already been living with EoE for many years when I attended my first EOS Connection conference, it and APFED changed our lives.
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As a mother of a child with EoE I know first hand the need for support and education, not only for my family but everyone we meet. Apfed was there when I most needed to learn more about this disease and encouragement to move forward. The many volunteers that donated time to make sure that I had the necessary resources to be the best advocate for my child was priceless. As a board member I am so very impressed with all the families that I meet that come together to advance the knowledge of this disease and know that dealing with this condition requires support on many levels. Apfed truly lives up to their mission and vision and continues to challenge the community to unite to advance the future knowledge of this disease with the outcome of providing a better quality of life for the families living with this disease.
I've personally experienced the results of this organization in...
My family volunteers yearly to assist with the patient education conference
If I had to make changes to this organization, I would...
This organization is doing a extraordinary job.